Kidney Care UK is concerned about potential cuts to the disability benefits which provide a lifeline to many people with chronic kidney disease (CKD) who face additional costs of disability.
People with CKD have told us how distressed they are by reports of cuts as well as how poorly designed and degrading the current benefits system can be.
We urge government to involve people with disabilities like CKD in reform of the benefit system to create a system that treats people with respect, supports people to work where appropriate, and delivers financial support effectively if disability brings additional costs or makes employment impossible.
We support government’s ambition to help people access work where appropriate. We hear regularly from people who feel frustrated by the obstacles their CKD has placed on their career ambitions. Support services can overcome some of these obstacles and should be widely available.
Jack, now a manager at Kidney Care UK, told us how the support he received helped him get back into work after his kidney transplant.
I was referred to an employment support agency, and they were really helpful in supporting me with job applications, reworking my CV, interview practice and so on. They spoke with my new employers and checked in with them over the months to see how I was getting on, and spoke to them about adjustments I might need. They even sorted me out a half price bus pass to help me get to and from work in the first 3-6 months.
Also essential is financial support for the additional costs of disability and when ill health makes work impossible. Living with kidney disease brings additional costs, for example a need for more heating as CKD means people feel the cold much more, the higher prices of a specialised diet and transport costs to multiple hospital appointments. CKD can make it difficult to maintain employment, due to symptoms like debilitating fatigue or the burden of having to attend dialysis, a life-maintaining but exhausting treatment, three days a week. Some people on dialysis have likened it to having an additional part time job that takes up half of their week.
Ill health can happen to anyone and cutting financial support can be counterproductive. It risks people with CKD having no choice but to heat their homes less, increasing their risk of infection, and missing hospital appointments because they cannot afford to take time off work or pay for transport or parking. The detriment to people’s health would place even more pressure on NHS resources.
We would like to see reform of the welfare system focus on increasing the quality and efficiency of assessment processes and ensuring people are treated with respect.
Helping people going through a distressing battle to attain benefits takes up a significant amount of the Kidney Care UK Patient Support & Advocacy team’s time. The vast majority of the PIP appeals the team support are successful, a strong indicator that the process is flawed. Assessors often lack the experience and knowledge of how kidney disease can impact on patients’ functional abilities. They are also often unaware that treatment of CKD is extremely burdensome in terms of time, complexity, and management, or that dialysis and transplants are treatments, not cures.
Kidney Care UK supports a review of the welfare system, to make sure resources are targeted effectively, but government must ensure the outcome is not reducing or removing essential financial support to people with disabilities who have no choice but to rely on state support.
- Kidney Care UK wants a welfare system that treats people with dignity, supports people to work where appropriate and provides an adequate safety net where this is not possible.
- Overhaul of the system is necessary – our experience is that people with kidney disease find the current system flawed, inefficient and often distressing to engage with.
- Chronic conditions like CKD bring additional costs. Personal Independence Payment helps meet those costs, increasing people’s independence and ability to engage with society, including pursuing training or employment. Cutting essential support would be counterproductive.